Ear BBs and capsules

Today I spoke with Carol at Dr. Futran’s office, and she is starting the process to get me an appointment for pulling the tube! The Interventional Radiology Department, the same gang of louts that installed it, has the responsibility of pulling it out. It should be sometime next week; I expect to hear tomorrow or the next day.

Meanwhile, my swallowing continues. Each day it seems to be getting a little better, so that the amount of coughing and other odd noises is reduced. I’m finding a bit easier to start up in the morning, and it seems like maybe more of my throat is getting involved in the swallowing. Yesterday I timed one of my IBPs, and it was around 18 minutes, start to finish. I’ve gotten to the point where I’m comfortable enough about my diet and my ability to swallow that I’ve actually stopped keeping a daily record of my calories. This is another part of my moving away from being a patient. Normal people don’t have intake records.

My work with Dr. Lu is progressing. I noticed a definite alteration in my state of consciousness during the appointment after my last post. I wasn’t jazzed or accelerated as I had been at Bastyr, but I definitely had a moment where it felt like something shifted, a feeling akin to when I’ve felt before as various drugs kicked in. Though I was a bit spacey, that was actually reassuring, since it made me feel like something was actually happening.

During the next appointment, I actually felt a momentary change in the way my throat felt. For reasons I don’t quite understand, my swallowing problem feels like there is a lump in my throat, on the right-hand side. While this isn’t really what you see on the fluoroscope, that’s how it has felt. On Saturday, as I was lying there, I felt the “lump” shift. It felt somewhat like it was dissolving, or melting, and shifting down, so that a part of my throat that had been blocked felt open. That feeling went away after a few moments, but it was very exciting while it lasted.

At the end of my appointment, I got homework. Dr. Lu painstakingly applied small adhesive dots carrying a tiny magnetic BB to four points on my ear. These points apparently correspond to the throat. My assignment is to periodically squeeze or tap these dots to stimulate these points, while swallowing. This is supposed to help remind my throat muscles of what they are meant to be doing. It may be actually influencing my gradual improvement, and at the very least it gives me something to make me feel like I’m working hard on getting better.

I’ve avoided further investigations into the combination of fish oil and chocolate. I’ve tried swallowing some of my pills, which has worked reasonably well, although I find crushing them still works better. Today I was adventurous and tried swallowing some of the small capsules of CoEnzyme Q-10 that I used to mix with the fish oil. I’m happy to say I got them down, but I wouldn’t say I have a practiced technique. Q-10 is a nutrient that seems to help people with heart failure, and, though optional, I find it does improve my energy levels. It’s nice to be able to take it without putting it through the tube, and without having fishy chocolate.

Another feature of my new eating regime is that I often go several hours between meals, which means I actually get hungry! Last night, I was sitting around in the evening, and I realized I was actually hungry, and I wanted something more solid than another IBP. I made myself a little rice, which I was able to swallow as well. I got the pleasure of actually chewing on it, and though it was a bit tricky, I swallowed it down. Imagine, feeling hungry, going into the kitchen and making some food, and then eating it! What an amazing thing.

Are you with me, Dr. Lu?

Tomorrow morning is my third appointment with my acupuncturist, Dr. Lu. (His MD is from China, so technically, I don’t think he is a “Dr.” in this country, but that’s what he calls himself. Being a fan of Steely Dan, I couldn’t pass up the lyrical allusion.)

Dr. Lu is a nice, fairly young man. His office is a 5 minute drive from my house, just on the other side of the Aurora Bridge (that’s the one the troll lives under.) He seems to know what he is doing, although I haven’t had any dramatic improvements following the first two treatments. Unlike the people at Bastyr, he uses points in the ears, as well as the hands, feet and throat. Since Dr. Lu teaches at Bastyr, and there was a chart of ear points on the wall there, I assume this says something about the complexity of ear points and the ability of the student who was working on me, and isn’t some doctrinal dispute within acupunture. But what do I know?

Other differences with Dr. Lu include the fact that he keeps me toasty warm, covering me with a blanket and sometimes shining a heat lamp on my bare feet. And, while at Bastyr I had the sounds of cars on 45th Street to listen to while I lay there, Dr. Lu plays some nice, innocuous classical music. Both times I have left his office feeling both relaxed and “well” in a way I usually don’t, and not stimulated or buzzing as I was after my first treatment at Bastyr.

The impatient Westerner in me is wondering how long I should wait for more dramatic results. I do understand that this is intended to be a gradual means of treatment, and Lu did say he thought it might take 10-12 sessions. However, I’m empirical, and since my senses are not trained to perceive my chi flowing more smoothly, I’d like something else to change, so I know something is happening.

In fact, the only dramatic change in my condition over the last few days has been the re-emergence of swelling around my jaw. This had pretty much gone away, and stayed away for a while, during which time I’d stopped doing massages to push lymph around, and hadn’t stretched my chest or anything. I think it’s getting better after a couple of days of periodically doing lymph massage, but it’s annoying. I’ll be talking to Lu about it, also, since he is working on things circulating around my body. Maybe he did something.

In other news, yesterday I finally took all my meds in by mouth. This includes the capsules of fish oil that I take for the omega-3 in them. Previously, I’ve been draining the gelatin capsules through a pin hole, and injecting it through the tube. Last night, I tried mixing it with my Instant Breakfast drink.

Let’s just say there is a reason why there aren’t more recipes involving fish and chocolate. The two flavors don’t mix well, and sadly, the chocolate didn’t have the power to hide the fish oil’s flavor. Tonight, I think I’ll try downing the fish oil by itself, and having the chocolate later. Ah, such fun we have here at the Swallowing Lab!

I did have a more successful outcome this morning, when I tried swallowing my smallest pill whole. It appeared to go down OK, though it was a little hard to tell at first. It’s small enough to get “lost” in the regions of my mouth where I don’t have good feeling, or to be stuck without my quite noticing, a mere 8mm long by 4mm across at its widest point. Tomorrow I’ll try the next largest, 10mm long by 5mm wide. (I notice that one is scored, so I could cut it in half if necessary. I’ll try it whole first.) Then I’ll work my way upwards in size. (Of course, the fish oil capsules are the largest thing to swallow.)

Undaunted by such minor adjustments, I today placed the call to Futran’s office about getting the tube taken out. I had to leave a message, so I don’t know what’s involved. I seem to recall being told that the actual removal procedure is very simple, like just yanking the tube out. Just why this wouldn’t leave a hole leaking gastric juices into my abdomen is beyond me, though. Perhaps some clever surgical trick causes the hole to seal up automatically? Or maybe, to a surgeon like Dr. Futran, the stiching involved isn’t enough to be worth mentioning? I also don’t know if they’ll make me jump through hoops like another barium swallow first. I really hope not. I should think the fact that I’m doing fine after nearly two weeks should be enough.

I will be happy if I have the tube out by Christmas. I will be very, very happy if I’m able to eat some more-solid foods by then. With enough attention from Futran and Lu, and my own work in the Swallowing Lab, I have my hopes. But, one way or another, I’m saying right now: no figgy pudding.


Friday I had an appointment with Marie, the swallowing specialist we’ve been seeing at UW. I didn’t come away swallowing any better, but I did finally get a good description of what the swallowing mechanism consists of, and an understanding of what’s happening for me.

Swallowing, given that it’s something people do all the time every day, even while driving or watching TV, seems so simple. You just, well, swallow, right? Ah, isn’t it pretty to think so.

As I have learned, swallowing is a very complex set of inter-related motions, involving many different nerves, muscles and body structures, which requires precise alignments and exquisite timing. It’s one of those biological processes that makes you think, even if you’re a secular humanist, that it’s very hard to imagine it just evolving. It’s way too complicated.

It starts in the mouth. Obviously, the tongue is involved, which is part of my problem. A good hunk of my tongue is “replacement parts”, and even that part that isn’t suffers from having had a nerve cut, so it’s all numb on the right side. Ah, but did you realize that there are also a bunch of nerves in the mouth which serve to detect something in the mouth, and prepare the rest of the swallowing mechanism for action? Marie made sure that, when I was trying to swallow small sips of cold water, that I held it in my mouth for a second, so those nerve messages would do their work.

The tongue slides the food, or water, (“bolus” in med-speak) back and down into the throat. It starts to move down toward the epiglottis, a flap of tissue that deploys to cover the windpipe (trachea), which sits at the front of the throat. Ordinarily, the epiglottis perches at an angle, tilted upward, with the low end toward the front. This way, it doesn’t block the passage, allowing air into the windpipe and your lungs.

Now comes the fun part. The epiglottis doesn’t have its own muscle to move it back and forth. (Bad design, in my humble opinion.) Instead, as you swallow, the trachea moves upward slightly, pushing up on the low end of the flap, levering it around until it twists to a downward tilt toward the back. This makes a handy little shelf, covering the windpipe, and sliding food down the esophagus toward the belly. Yum! The process also involves “stripping”, or a peristaltic motion of muscles along the back of the throat that contract and release, pumping the food down.

But, as you might guess, problems come up when things don’t move quite right, or with quite the right timing. That whole “covering the windpipe” thing. Trickier than it sounds. Suppose it doesn’t fall over all the way. Stuff goes down the wrong tube. Or, there’s a small pocket where liquid can collect, between the back of the tongue and the flap. It ordinarily empties when the flap moves down, but what if it doesn’t, and fluid seeps out of it after the flap has reopened, and sneaks around the side? Not good. And if the fluid comes back faster than the flap has time to move to cover? You all know what that feels like. It happens to everyone once in a while. Even without surgery, the timing can get thrown off enough to cause coughing or choking.

Me, I’m all messed up. The tongue’s been monkeyed with. There is scar tissue and adhesions around my trachea, and it’s not in exactly the same position it was in originally. Oh, and the radiation that may have been the cause of the tumor has also affected my stripping muscles, so that they’re stiffer than they used to be, and don’t pump as well. Which probably wasn’t a problem until we started messing with everything else. The many little neck and throat muscles that help support the structures and move them, have tightened, or alternately, stretched or weakened, from my head being in funny positions while in the hospital and since, while I haven’t been eating.

So, now I realize that it isn’t about just waiting for everything to heal. While it is true that structures are still shifting and changing size in small ways, it isn’t like I will just return to a point where my previously unconscious “swallow” programming will work. Enough of the parts are different now that it seems better to think of it as learning to swallow again.

Now that I’ve gotten a good explanation, I can understand what it is I’m feeling. Usually, when I try to swallow, a certain amount of the bolus is pooling in an area to the left side of the epiglottis, just above the vocal cords. That pool isn’t emptying out completely when the flap falls over. Whether that’s because the flap isn’t going all the way over, we’re not sure. It was hardly moving in April, it was doing much better, but not perfect, last barium test. But I can usually, move the contents of the pool back up, and then swallow more of it down, and progressively get it out. It pools less if I hold my head in a certain way when I swallow. I have managed to get to a point where I don’t usually get any fluid down my windpipe, if I’m concentrating, and don’t take too much at once.

So now, it’s trial and error, supported by further physical therapy on my neck. With luck, we’ll get my trachea moving really well, and all the other little muscles doing the right thing, and that will improve the movement of the flap and synching everything up. I’ll keep doing swallowing drills, trying to learn how to make it all work. And we’ll see how it goes.


Months, that is, since Paul’s surgery. And things are better than they were a month ago.

Feeding is better. For the past couple of weeks, Paul has been able to get enough calories. In the past few days, he has been so successful that he’s regained a pound or two of the 8 pounds or so that he’s lost since the surgery. Unfortunately, he has to spend a lot of time {whirr-click-click-click} hooked up, but there’s a lot less discomfort than {whirr-click-click-click} pre-pump.

Swallowing is better. Hearing that from the speech pathologist has improved Paul’s spirits considerably. He continues to nibble on Cheerios, Skittles-type candies, and the occasional English muffin with peanut butter. He has also been chewing gum recently, as a way to stimulate his saliva production, so that it is thinner and less sticky. The cold water “swallowing practice” is not yet well established; we’re going to work on that.

Swelling/scarring/range of motion is better. The physical therapy has been helping on a number of fronts. I’ll coax Paul outside for some more photos soon, although I think that the improvement is more palpable than visible, especially later in the day (when the swelling is more noticeable).

Attitude is better. Paul’s feeling sluggish, and wanting to do something to change that, is a big improvement over last month’s bouts of despair and hopelessness. Chores are good. Treadmill is good. Thinking about the future is good.

Medical billing is… now, that would be too much to hope for, wouldn’t it? However, the statement from MD Anderson arrived yesterday; looks like Christina sent it the day that I spoke with her. And, as near as I can figure out, there aren’t any unexpected charges, and Group Health has been paying just about everything since Paul (more than) met the stop loss. (They wouldn’t cover the dentist Paul saw at MD Anderson, but we had been warned that is often the case, and it’s pretty clear on our insurance policy that they don’t, so fine.) So maybe medical billing is better about like swallowing is better; not as much as we’d like, but moving in the right direction.

Barium swallow

I had a follow-up modified barium swallow test today. I was quite worried about it, fearful that it would show no changes since the one at the end of April. Last night I had several related dreams. The one I remember is being invited to an award dinner at a restaurant, and following several people in, who walked directly into the back of the place to their table. As I went in, the room suddenly became very small, and for some reason I had to step up onto a chair and walk across a table onto another chair to follow them. And then it turned out I was at the back wall of the room. I couldn’t follow them, because I couldn’t walk “into” the wall.

Luckily, the test this morning showed important positive changes since April. Not that I’ll be scarfing hot dogs on the Fourth of July*, but improvements none the less. It’s clear that sensation in my throat has improved. I’m better able to feel the stuff going down, and clear any that seems headed for my windpipe. In fact, I don’t think I aspirated anything this morning, which was a big change.

We discovered that turning my head to the right (the side the surgery was on), with chin slightly down, enables me to clear things more swiftly, and with somewhat less “pooling”, which is what they call the collection of fluid that doesn’t go all the way down. This suggests that we may be able to train me to take best advantage of whatever function I do have.

We might have gone further, but by the time we’d gotten that far, my swallowing muscles had noticeably tired. With several swallows per spoonful, and several spoons tried, I’d done a lot. Also, that barium is very sticky, and drying, and once you’ve had enough, it can become a hindrance of its own. So we stopped before we got to the barium “pudding”.

The good news is that the extraordinarily wary Marie cleared me for “swallowing exercises” with water, to work on building up my swallowing strength. Twice a day, I get to try half a spoonful of water, and practice a swallow-swallow-swallow maneuver. I’m allowed three half-spoons each “exercise” period. The water is supposed to be chilled, so I’ll be able to feel it going down.

So, it’s something. There HAS been change for the better, even if it’s less than I might have hoped for. I feel like I can let go of a little bit of my fear that I’m never going to really eat again. That’s a good, good thing.

*This is a metaphor. Hot dogs have too much sodium for me to eat on my diet. Burgers, though…mmmm. Maybe next year.

On venting

For the first several months of this blog, I spent a fair amount of time working on my posts. I wrote a lot of things that never made it in front of any eyes other than my own, and sometimes Paul’s. I used writing for the blog as a way to process what was going on. I’d write a bit, save a draft, do something else, come back and delete, edit and write more. I was on a leave of absence from work, and was at home most of the time, so I had lots of time to give to my writing.

For the past month, I’ve been trying to hold down a job again. It has taken a while for me to work back up to a relatively normal schedule, but I’m getting there. What this means, however, is that I have many fewer hours each day in which to deal with household chores and medical bills, process my feelings about the myriad things that are “up” for me right now (Paul’s health and emotional well-being, my physical and emotional well-being, our finances, our future… you get the picture), and, oh yes, think about blog posts. So I’ve been spending less time writing my posts. Sometimes, because it’s just easier, I’ve posted photos of our cats or written travelogues about past anniversary celebrations. Or, when I’ve been particularly worked up about Paul’s medical care, I’ve done what, for me on this blog, passes as venting.

You may not have recognized my posts from May 27, May 28, June 3 or June 5 as venting. Looking back at them, I recognize that I wasn’t particularly clear in expressing my frustration and anger (though you could certainly see it leaking out all around the edges… need more therapy, Kimberly?). There was a whole lot more kicking and screaming going on in my head than I put down in writing. And there was a whole lot less processing of and reflection on my feelings than went into many of my earlier posts.

Melanie nailed it in her description of the downward emotional spiral arising from the absence of needed attention/care: frustration, anger, depression, withdrawal, isolation, resentment. I won’t speak for Paul, but I’ve gone pretty far down that spiral a few times recently, and for me, each repeat trip seems a little faster. And, unlike the rat who, having learned the maze, gets to the cheese faster, this human still isn’t getting her (or her husband’s) needs met. Clearly, we have not found a satisfactory strategy. So, how to get the needed care? First (deep breath), I have start again with the (previously held) assumption that the folks at UWMC are both able and willing to help us solve the problems that Paul is having. (And that if by some chance they can’t, someone else can, and we just have to keep looking.)

Just so you know, I’m not planning to dump on Dr. Futran’s desk either the President’s Cancer Panel report on survivorship, or the large number of patient-education PDF files and web pages related to swallowing and tube feeding that I’ve found on the web sites of other hospitals/organizations and even UWMC. Here’s what I am planning to do: Along with Paul, write a letter to Dr. Futran, using the list of recommendations from the CPC report as a (hidden) framework. In the letter, discuss how we feel about the care that Paul has received (both the positive and the negative), and what we want/need now in the way of records, information, resources, etc. Include a list of questions that we want to have answered regarding Paul’s healing, swallowing, tube feeding and follow-up care. I’m thinking about faxing the letter to him a couple of days before Paul’s appointment on July 1, so that he’ll have time to read it before he the appointment.

In the meantime, I’ll try to work on a little more clarity here, too. But understand that there may still be the occasional passive-aggressive leakage… or lots more pictures of the cats.